Why Can’t People with RARE Diseases & Wheelchairs Fly Major Airlines?

November 1, 2023

Sign Open Letter to Improve Accessibility on Airlines

As an organization founded to gather together advocates for rare diseases to enable and empower their efforts, Global Genes is keenly aware of the need for and difficulties involved in traveling with a disability and the related medical equipment. We call upon all airlines to acknowledge, respect and act on improving the needs of those traveling with a disability and their vital medical equipment.

Too many of our friends, staff, event speakers and conference attendees have had their travel made unnecessarily burdensome or in some cases impossible because of neglectful and disrespectful treatment of their wheelchairs, mobility devices or other medical equipment by airline staff.

It is not enough to accommodate the person by forcing them to fit into the standard seating on aircraft. Airlines must stop treating wheelchairs and other medically necessary devices as baggage or cargo that can be thrown from a luggage loader.  These fragile and highly expensive devices are all too often mishandled and damaged, resulting in passengers with rare disease being stranded without a method of mobility.

While these are issues for all people with disabilities who need to travel by air, there are unique examples among those whose medical needs stem from rare diseases.  30 million Americans are living with a rare disease, and the number of people with disabilities and the need for medical equipment is even greater.

Leaders in the travel industry have the responsibility and opportunity to create policies to support all travelers, establish procedures and educate all levels of your employees on how to transport mobility devices and medical equipment.  In a time when much of the world is focusing on diversity, equity and inclusion, let’s not forget that this includes all people with disabilities and those that are caring for them.

Nominal compliance with ADA requirements is not enough. Airlines must better train their crews to accommodate passengers traveling with medical equipment and mobility devices. Crews should never be inflicting harm on these paying passengers or on their medical equipment. Of course we mean physical injury or damage but also the mental and emotional damage. People with disabilities and rare diseases are far too often made to feel excluded or burdensome when they attempt to be included in basic activities others take for granted. Your airline’s team should be reducing that emotional toll not increasing it.

Airlines need to go further and create new seating opportunities that allow a person to remain in their own (often highly customized) wheelchair for the flight rather than pretending all of them should be able to transfer to an aisle-sized temporary wheelchair and then transfer to a standard economy airline seat. Delta seems to be making great strides in this direction and we at Global Genes have applauded this on social media.

As an industry whose goal is to transport people safely and efficiently, supporting the disability community and their medically necessary devices should be prioritized and valued.

Neena Nizar’s motorized wheelchair after a recent flight this fall.

Earlier this summer Global Genes spoke out on this issue, and we are discouraged to find examples of this negligent practice increasing rather than improving.

Some examples include:

Neena Nizar’s story in USA Today and the latest example here (United Airlines)

Adam Johnson’s related blog post (Alaska Airlines)

Sean Baumstark‘s story in USA Today (Southwest)

Adam Johnson (lives with Mitochondrial disease):

Last March, as we were sitting at our gate about an hour before departure, two Alaska Airlines employees approached to inform me there was a mobility scooter embargo for the E-175 aircraft & that I wouldn’t be allowed on the flight. After an incredibly long back & forth, I was rebooked for a flight departing 36 hours later out of an airport that was an hour away, on a different aircraft.

In September, after Alaska Airlines finally “resolved” their issues with the E-175 aircrafts, I went back for my first flight with them. After arriving at my destination, they proceeded to lose control of the wheelchair their employees were using to get me down the ramp, causing me physical injury, trauma, and pain.

Daniel DeFabio (his son had Menkes Syndrome)
My son Lucas couldn’t sit upright in an airplane seat. The only air travel solution we could imagine for him was to buy him two seats to lay across.  Even then his real wheelchair gets checked as baggage at the gate. Lucas couldn’t just use a loaner or a substitute basic wheelchair. He needed his customized chair. If it is no longer working upon arrival we were stranded.  So instead of risking all that my family decided to ground ourselves. From age two on we never traveled by air with Lucas. This meant for 9 years we limited ourselves to destinations we could drive to.

Sierra Phillips (mother to a child with Warsaw Breakage Syndrome)
We get to our seats and once everyone is on the plane we are told they have to take our bag since they were out of overhead space. My husband told the man the bag contained medical devices and said he still had to take it. We then push back from the gate and sit on the tarmac for almost 90 minutes. No water, no food, at 7pm. We get off the plane, and our bag was never found. I had to spend hours each day of our vacation fighting with them to get our medical devices replaced. JUST GOT IT TODAY. 10 days later. (August 15, 2023, American Airlines)

Nikki Patrick (lives with Gastroparesis and SMAS)
On my way home from Global Genes RARE Advocacy Summit, I got into it with a flight attendant who just could not understand that my g-tube backpack was attached to my body and thus could not go into the overhead bin. (Frontier Airlines, September 2023)

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